Functional outcomes and participation in young adulthood for very preterm and very low birth weight infants: The Dutch project on preterm and small for gestational age infants at 19 years of age

OBJECTIVE. Young adults who were born very preterm or with a very low birth weight remain at risk for physical and neurodevelopmental problems and lower academic achievement scores. Data, however, are scarce, hospital based, mostly done in small populations, and need additional confirmation.

METHODS. Infants who were born at <32 weeks of gestation and/ or with a birth weight of <1500 g in the Netherlands in 1983 ( Project on Preterm and Small for Gestational Age Infants) were reexamined at age 19. Outcomes were adjusted for nonrespondents using multiple imputation and categorized into none, mild, moderate, or severe problems.

RESULTS. Of 959 surviving young adults, 74% were assessed and/ or completed the questionnaires. Moderate or severe problems were present in 4.3% for cognition, 1.8% for hearing, 1.9% for vision, and 8.1% for neuromotor functioning. Using the Health Utility Index and the London Handicap Scale, we found 2.0% and 4.5%, respectively, of the young adults to have >= 3 affected areas in activities and participation. Special education or lesser level was completed by 24%, and 7.6% neither had a paid job nor followed any education. Overall, 31.7% had >= 1 moderate or severe problems in the assessed areas.

CONCLUSIONS. A total of 12.6% of young adults who were born very preterm and/ or with a very low birth weight had moderate or severe problems in cognitive or neurosensory functioning. Compared with the general Dutch population, twice as many young adults who were born very preterm and/ or with a very low birth weight were poorly educated, and 3 times as many were neither employed nor in school at age 19.